If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country. Rare diseases are those that affect fewer than 200,000 Americans at a time. There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day. 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population. For perspective, consider that in 2014, there were 14.5 million Americans with a history of cancer, according to the American Cancer Society. And 1.5 million Americans have a stroke or heart attack each year. Rare diseases, by comparison, impact many more people.
While it’s certainly frustrating, it’s important that you don’t give up searching for an accurate diagnosis, whether you suspect a rare disease or something more common. Continue to see your primary care physician, who can help track your symptoms and let you know if any new research has been done that might help.
The last day of February is designated as "Rare Disease Day" to raise public awareness about rare diseases and their impact on patients’ lives. (ORC: 5.254 Rare Disease Day. Added by 130th General Assembly File No. TBD, HB 27, §1, eff. 3/3/2015)
Facts and Statistics: it is estimated that 350 million people worldwide suffer from rare diseases.
80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear. Approximately 50% of the people affected by rare diseases are children. 30% of children with rare disease will not live to see their 5th birthday. Rare diseases are responsible for 35% of deaths in the first year of life. The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases. Only 5 percent of rare diseases have treatments.
Source: ohiosenate.gov | ohio.gov | globalgenes.org | ibiobq.org
In 2023 Rare Disease Day in Ohio in USA falls on February 28.